International transfer of health data for research
Data sharing is an essential part of modern research. Within medical research, pooled data on individuals are often needed to ensure sufficiently large study numbers, and to replicate findings and identify complex pathways. The EU General Data Protection Regulation 2016/679 (GDPR) has harmonised legislation on the processing of personal data within the European Economic Area (EAA, which comprises EU member states plus Iceland, Liechtenstein, and Norway). However, substantial challenges remain for data sharing outside of the EEA. In particular, there is a lack of non-consent based transfer mechanisms that can be used for sharing personal data with public institutions in other countries such as the USA.
This project aims to:
- illustrate the value of multinational medical research
- compare the potential of different solutions for ensuring sufficient transfer of health data outside of the EEA;
- inform the European Institutions in the forthcoming evaluation of the GDPR, especially with regard to the transfer of personal data outside of the EEA (chapter V) so as to improve procedures for international transfer of high quality, personal research data, safely and effectively.
The project will exemplify how data sharing adds value to EU research and its translation to policy, innovation and practice, and it will clarify principles and options for reform taking into consideration the legal, ethical, and in particular privacy implications.
This project is the first tripartite collaboration between EASAC, FEAM and ALLEA, and will benefit from the complementary expertise joined in these networks. EASAC has a history of interest in optimising the use of health research data, and worked together with FEAM in providing evidence on the value of research and the need for collaborative activity, in previous discussions with the European Commission and Parliament (e.g. ‘’Protecting health and scientific research in the Data Protection Regulation’’). FEAM has collaborated with numerous health stakeholders to issue recommendations in view of the discussions preceding the GDPR (e.g. “Ensuring a healthy future for scientific research through the Data Protection Regulation”). ALLEA has significant interest in sharing and using data (e.g. “Flourishing in a data-enabled society” and “Sustainable and FAIR data sharing in the Humanities”) and will ensure that the project takes a broad and interdisciplinary perspective.
The joint statement is scheduled for completion during 2020. Inputs of written evidence relating to the objectives and scope described above will be welcome and will be especially helpful if received before July 1 2020. Please send any inputs to email@example.com to overview